Thursday, September 23, 2010

Joey is doing fantastic at home! Looking at him and his big beautiful eyes you would never believe all that little boy has been through. He is smiley, chubby, and pink - all wonderfully surprising things for a little boy with his heart. The doctor continues to be impressed with our little Rocky.Weighing in at 12 lbs 13 ozs could have something to do with it, too. He is gaining weight so fast! He does love to eat.The pressure measured around his aortic valve is excellent! The balloon, despite the drama afterward, was successful. The pressure across his pulmonary artery (PA) band is definitely high enough to warrant the surgery - so he's ready! Joey is lined up to have his hole closed up on October 14th! Let's patch this thing up! I will post more about the details of the actual surgery at a later time.

Thursday, September 9, 2010

So, after Joey's sleep study the pulmonologist/ sleep specialist thinks it might be /could be / maybe hopefully reflux. Yup, maybe we've been hanging out on a cardiac unit after my baby was saved on Thursday worrying about arrhythmias because he has acid reflux. I love it. That would be an easy fix!

Another avenue they're looking into is from a neurological aspect - is he having subtle brain disturbances, like seizures. Right now as I type Joey is sleeping happily with 26 electrodes glued to his head. There's a net-stocking covering the wires so he doesn't pull at them, so he looks like those long stocking-cap skiing hats. Or maybe an elf. He's awfully cute, either way.

Still, they're not sure yet. There are so many possibilities that we're just hoping for a clear answer to go home. Today is 1 whole week that we've been here!

Pat's Thought: "Only my son would require $30k worth of diagnoses to come up with reflux..."

Tuesday, September 7, 2010

... and sleeping? Joey is having a sleep study done today while he naps. In looking for answers to his bradycardia (normal beat but VERY slow rate) the doctors have lined up a couple of tests in an attempt to determine where these episodes are originating.

Today they have him all hooked up to watch his breathing while he sleeps. All babies (an adults for that matter) have normal brief apneic (not breathing) episodes. The real question is if there is a correlation between them and his heart slowing down. Tonight or tomorrow they may do a test to monitor brain-waves to see if there any any neurologic component like seizures. Really, they are just trying to cover all their bases.

The fact is that on Thursday he had a lot of electricity sent through his little heart for which we are eternally grateful. After such an event, however, it might have irritated his heart's normal electrical circuit, so we are waiting to see what they can do about it. In the meantime, we are not going anywhere. The doctors made it clear that this is not a new baseline, but rather something to be treated.

Happily, Joey looks great! It is ironic to watch him acting like his normal happy self even while the monitor is showing his heart acting-up. It is comforting, though, that he is eating well, interacting like normal, and I can still snuggle him. My Little Miracle!

Praying for wisdom and guidance for these wonderful docs in treating our Joey!

Sunday, September 5, 2010

... just in his own rhythm! Yesterday they moved Joey to the step-down unit, a very positive step towards the door! Last night, however, he started "skipping beats." While not uncommon after being defibrillated it is still not normal and may or may not lead to a problem for Joey.

Today the are monitoring him with 2 different cardiac monitors, and they switched his room to be closer to the ICU "just in case." They are waiting to ensure that all the cardiac meds he was on before are cleared from his system so as not to effect his heart rhythm and seeing if everything aligns by itself. Really, it's just a waiting game now. We know we're not going home today, but after that it depends what they are able to determine about Joey's little heartbeat.

Friday, September 3, 2010

Joey is doing so much better today, Praise God! He has really bounced back well in such a short time.

This morning they took out the breathing tube - off the ventilator again! He's breathing pretty well, although a little fast likely due to extra fluid leftover from yesterday. (To raise his blood pressure they had to give him extra fluid during the recusitation.) His eyes are open, looking around, stretching and wiggling like a good little baby!

One of his previous heart medications is no longer acceptable after his arrythmia, so today's big trial is another type of heart medication. So far he has tolerated it well, cardiac-wise, but they're still watching to make sure his heart doesn't start freaking-out again. No more of that, please.

If all goes well they will talk about moving him to the step-down unit possible as soon as tomorrow. :)

My little Chubby Cheeks is eating again, also, although he's taking it slow. It is very common for kids to be a little slow in picking up eating habits after all he's been through. He is happier at least having something in his belly, understandably!

Thursday, September 2, 2010

So we got here to Children's at about 7 this morning to a sea of smiles. Everyone thought Joey was looking good and expected him to have a relatively uneventful cardiac cath. We met our old doctor, Dr. Kanter, who did his first cath when it was a much more dangerous procedure. Everything looked good, and the only problem is that he was starting to get a little hungry.

We were allowed back into the cath room, where the put a mask over his face with anesthesia. After he fell asleep, we were able to kiss him quickly and then head out to the waiting room. The nurse came out after about an hour of an expected three-hour procedure. He was all smiles and said that everything was going well, and they were looking around. (Like Kate mentioned yesterday, they put little sensors up his arteries and veins to see size and pressure.) He was doing well and they were going to start ballooning soon.

About 40 minutes later, Dr. Su, who is an attending (boss) up in the CICU, came by. We knew her well from Joey's last stay in the CICU. She saw us in the waiting room and asked us what was wrong. We had no clue at this time, but Joey had coded. (In other words, his blood pressure dropped to 20/10, and they needed an immediate team of doctors to intervene.) She had gotten a page about a code in the cath lab and came down to see who it was--she was just as amazed as we were.

Not more than a minute or two later, the nurse came back in with a much more somber face, and said that Joey had ventricular fibrillation, which is a fatal heart rhythm, so they had to shock him (think the metal paddles on ER shows up against his chest with a loud "clear!", except baby sized...) and were performing CPR on him. He also said that they were preparing to put him on ECMO (that whole heart-lung bypass thing) again. As he mentioned that, we saw a few techs quickly wheeling the large machine into the unit. Soon thereafter, someone came running in with a red rubbermaid cooler, which is used to carry blood for transfusions or ECMO. Returning to ECMO would not be a good thing for Joey, since the last time he was on it, they had to ligate one of his jugular veins, so if they were to do it again, they would have to go in through his chest. So it would be a major procedure.

We were obviously shaken...I'm not sure anything anyone could have said would have taken us aback more. We were both crying and just trying to make sense of this "routine" balloon procedure and the fact that our baby was barely hanging onto life. We were blessed by the knowledge that the best doctors available were working on him, and everyone was quite reassuring.

The nurse came out to say that he had a normal rhythm again, but his heart was too slow... They put an external pacemaker in him, which means that the power source is outside of his body, with just a wire going in, and that was making his heart beat at a normal speed. They were going to hold off on the ECMO for the time being, but it was still serious. There were a few hugs, and he apologized for tearing up in front of us.

Part of the code team that is called for the cardiac cath is an emergency echo-cardiogram. (This is the ultrasound machine that gives pictures of his heart) Providentially enough, it was our usual cardiologist, Dr. Heath (who we love as well) who was on call. The ballooning had been really successful, and the pressure had dropped significantly. This was great news, because the balloon was a necessary procedure for Joey...there weren't any good alternatives. If it hadn't gone well, or if he had coded before the balloon, they would have waited a couple of days for him to stabilize and then done it again. None of us needed the stress of having to go through a second cath in just a few days...

Dr. Kanter came in and talked a bit with us, and assured us of a few things:

The vfib was directly caused by the ballooning procedure. There is no increased risk of the same thing happening, say, in 2 weeks when he's at home and his sister runs at him at full speed screaming... Likewise, there's little chance of it happening again here in the hospital.

It was likely caused either by the valve getting stuck open briefly, in which case the heart cannot push blood throughout the body, or by a small clot breaking off during the balloon and briefly blocking the cardiac artery.

Through medicine, CPR, and the pacemaker, his blood never stopped flowing, and the blood pressure only dropped to such a critical point for a few seconds. Because of this, he should have no permanent damage from the incident.

His heart was beating on its own. They weren't giving him any meds at all to help the beat and they were no longer using the pacemaker. He was stable.

He was going to be admitted to the CICU, where he'd be monitored for a while to make sure he was doing alright.

They took the cooler of blood back to the blood bank, and we both sighed in relief. No ECMO.

The social worker who we met last time we were here came running down to see how we were doing. We chatted about his condition with her until it was time for him to be wheeled up to the CICU. We followed the bed and got up to the third floor right at 12nn. Once a week, Thursdays at noon, they have mass in the "chapel" next to the CICU. We went in and had probably our most distracted mass without kids in ages...

Kate's dad was waiting in the waiting room when we got out of mass. He had come for his prior surgery and cath, but since this one was "routine", he skipped it. As soon as he got our text, he left work and made it down here quickly. We later chastised Joey...there had to be better ways to get his Papa to the hospital for the procedure.

So that brings us to now... He's in his room...looking very peaceful. He still has tons of lines and monitors going everywhere, but his heart is doing the work itself. Later they will wean him off of the ventilator and let him wake up. If he proceeds well with this, he might be discharged in just a few days.

So our priest, Fr. Kelly, who baptized Joey on the day he was admitted, has a nickname for him: Rocky. Joey just keeps fighting as much as he can. When we talked with Fr. Kelly today, he exclaimed, "Rocky did it again!" Which just about sums this whole thing up...

Let me sum up...

When our Joseph Thomas was just 8 days old he was diagnosed with 3 major heart defects. He has faced multiple heart surgeries and life-threatening procedures, survived CPR, been on various forms of life support, lost and found his voice again, and defied statistical odds. The doctors called him "Rock Star" and our Priest-friend called him "Rocky." He will face more challenges and surgeries in the future, but we hope not for a while. This is our boy's story!